On Tuesday evening, I received a late invite to join a lobby group of the NAI (Neurological Alliance of Ireland) and the Irish MS Society to protest in- and outside Leinster House, the seat of the Irish government. I was quite happy to do so, because, after being an MS Society spokesperson last year relating to new MS medication being denied to Irish patients, I more than wanted to put my shoulders under a new campaign to highlight the state of neurological services in Ireland.

May 2013 is the European Month of the Brain and since Ireland is currently hosting the European Presidency until the end of June, the NAI wanted to bring forward facts and figures, as well as personal stories to people in government. I was glad to see so many deputies and senators attend the meeting because sadly neurology in Ireland is somewhat overlooked when it comes to bringing in new measures and helping make neurology services run the way they should be run.

What I witnessed during the 3 speeches given to Oireachtas Members in government buildings was the pain of being diagnosed, the smashing of dreams that needed to be rebuilt and a call to show anger at what is going on in Irish neurology today. Not only did I feel the same hurt of being diagnosed, I cried because I had no idea things were that bad and indeed I felt anger because of it.

It’s given me the drive to tackle those that need to wake up to this, the desire to try and help other neurological patients and to make people realize that this is an issue that needs to be highlighted over and over again until things do change for the better. So please forgive my anger that will show its ugly head in this blog post. Seeing Emma, one of the people speaking about her hurt of being diagnosed with MS, followed by Professor Hardiman’s call to anger, the government cannot keep ignoring neurologically ill people.

Just to give you an idea, here is some data the NAI was able to give us:

Ψ 38% of patients, more than 5,580 people are waiting more than a year to see a neurologist in a public hospital outpatient clinic,

Ψ Over 1000 patients are waiting more than 4 years for a hospital outpatient’s appointment,

Ψ 989 out of 2,700 patients requiring neurosurgery have been waiting more than six months,

Ψ Ireland has 7 rehabilitation consultants; if we had 50 we’d still have the second lowest per capita rate in Europe. If we had 150 consultants, we’d have fewer per capita than Serbia, Czech Republic, Estonia, Latvia and Croatia,

Ψ Just one is six people of the 15,000 per annum with serious conditions requiring specialist Neurorehabilitation services can access these.

Professor Orla Hardiman, consultant neurologist in one of the biggest hospitals in Ireland, mentioned that with only 33 neurologists in Ireland, Mongolia has more than Ireland has, despite having fewer inhabitants! (Mongolia has approximately 1 million less inhabitants than Ireland). She begged the question why people in Ireland are not angry at how few and bad neurological services are because in other countries like France for example, people would go out and protest against bad services.

Professor Hardiman said that the brain is who and what we are, and therefore we have to invest and properly manage who and what we are. A heart transplant is easy enough these days, but brain transplants belong in the world of fantasy. Because of that, urgent reconfiguration of existing services should be done. And the best thing of all, our HSE, the health department of our government, doesn’t even have to spend money to make this happen, the only thing that needs to be done is do a restructuring of services… cheap or what? Our government should be happy that this improvement would cost very little, yet they pretend as if their noses are bleeding and put their head in the sand like ostriches.

From my own memory of living in Belgium, I know people are going out on the street in protest, because you really can achieve much by doing so. Irish people tend to be couch or pub-protesters… good at talking about it, no good at all in actually protesting on the street to make their voices heard. I myself have asked Irish friends why they’re not interested in protesting in the street, and “it’s just the way it is, we don’t really do much when things go wrong.” Sure, whenever Budget Day arrives, there are a few protest marches but no more than 5 because by then “because it’s not going to change anything anyway.”

Professor Hardiman begged people to get angry, and with her approval, I am and will be angry at how bad neurological services are. When I go for my neurological check up, I am angry when I see carers with their severely disabled people sitting in motorized wheelchairs, having to travel 260km to come by car or train, all the way from Donegal in the north-west of Ireland to Dublin… for a 30min check up. After a those few minutes with their consultant, they face another 3h drive home.

I am angry because you just do not do something that cruel to disabled people unable to talk, unable to go to the toilet by themselves and their carers needing a huge amount of patience and strength to deal with all this. It makes my blood boil because it’s an injustice to someone already dealing with unjust, physical disabilities.

I can still walk, do my check ups on my own without the need of someone having to look after me 24/7 and when I am in the waiting room before being seen by my consultant, I count myself lucky that I live close to the hospital and that I am the way I am. But people coming from the other side of the country, sick and disabled as they are… Sorry, but that it’s so, so wrong. Why not put a few neurologists in Letterkenny hospitals, or in Galway? Save those people living in Donegal the hardship of having to travel 7h for a 30min check up!

The NAI had this to say: “14 months ago the Government published a national Neurorehabilitation policy. Even though this focused on cost free service improvements through reorganization, no progress has been achieved. Even the undertaking to develop an implementation plan has not been kept. Meanwhile service deficits continue to worsen due to the impact of cuts on frontline care provision in every constituency.”

Where is the proof that the government is looking into improvements? It’s not in hospital wards or neurologists’ offices, that’s for sure! In the meantime, people are waiting on a diagnosis that might change their life forever, others are waiting on follow up examinations after being diagnosed and put on long waiting lists (I myself had to wait 13 months to get a new MRI scan of my brain… my brain… yes, that living, breathing thing in between the inside of my skull and above my nasal cavity, that thing that makes me who and what I am!). The proof is not in having more neurologists at work in faraway places like the north west of Ireland, and it’s not in having Neurorehabilitation services.

In fact, Ireland has never invested in Neurorehabilitation services even though this would have a good outcome for our economy because people could get back to work, or wouldn’t have to pay for expensive nursing homes and would not have to be readmitted to hospital over and over again. I’m not an economist, but to me this all sounds very easy to solve when they are looking for more cash in their government tells: cheap reconfiguration of services and more tax income of people going back to work.

So why do they not see that neurological services are a child waiting and wanting to grow up into a worthy service that would benefit the 700,000 people living with a neurological illness in Ireland?

NAI: “Oireachtas members were urged to allow Ireland to hold its head up in Europe as it prepares to host the Month of the Brain by urging practical steps on neurological issues. This includes calling for an implementation plan for the national Neurorehabilitation strategy. Although the national strategy published 14 months ago, an implementation plan has still not been developed.”

People living in Ireland deserve the right to rehabilitation. You, me, the person sitting next to you on the bus and the stranger in the bank, the bus driver, the homeless person on the street, the child in its buggy and the elderly, the ill and the needy demand that Neurorehabilitation is taken seriously by the Irish government. We demand services that will help our longevity and our happy-go-lucky attitudes. We demand that we, as sick people, are taken seriously and we demand that we are listened to, understood and protected.

With Ireland being the president of the EU until the end of June, it is shameful, disgraceful and shocking that there are only half-working, or non-working neurological services. People in government forget that one day, they might need these services to stay alive at some stage in their lives and it is such a pity that they’re not willing to address the urgency of having proper neurological services.

I pray that no EU politician will need our neurological services during this period, because they’d be better of flying home instead of ending up in an Irish hospital. Some days mind over matter doesn’t count when you’re ill and it’s only when this happens that you need proper medical services. Our health department is indeed in a shambles.

I myself am one of the lucky ones. I have a fantastic GP and neurologist and the rest of the team is a phone call away when I need them: two MS nurses, neuropsychologist, ophthalmologists and physiotherapist and when I do, I am being referred to them. Sure, I might have to wait a few weeks or months, but at least I am living in a Dublin suburb, in the vicinity of two of my attending hospitals. I am also quite lucky because my illness is now fairly stable and although severe fatigue will always be my biggest and main disability, I can rest and sleep when I feel I need to, which in all honesty, is quite frequently. My other painful symptoms are handled by my GP and pharmacy who are just a stone’s throw from my house.

Imagine living in rural Donegal though… in a wheelchair, bound to carers for your every need, having to sit in a car for 7 hours to have a 30min check up…

For more info, check the Neurological Alliance of Ireland website: www.nai.ie

I have been incredibly lucky to live near Johns Hopkins in MD (USA) and married to a former Hopkins nurse. Those numbers sound horrid in terms of numbers of neurologists to treat patients needing their services. I know this may sound crazy, but when my neurologist left Hopkins, the only thing I asked was for him to give my case to another who answers emails. I don’t need to be seen very often, but there are times where I need advice. As an added bonus, our visits can be shorter because the doctor can look and see everything new in my emails and tailor the exams towards symptoms and progression. Usually I am only there for a brief exam as part of the TOUCH program for tysabri these days unless some thing is bothering me.

Back on your subject though, if they can’t put services near the patients, could they at least allow for some long distance consultations to reduce the need to travel for hours to get to Dublin? For what it’s worth, it would seem a cheaper way to provide needed services to some of the under-served living further away. Once they have a diagnosis is there an easier way to follow up?

It does sound horrible and I know a lot of people do not get the services they require. If only Ireland didn’t spend so much money on thing it didn’t need so neurological services can be decently upgraded… right now that is a dream only. It will take some time before changes are implemented, but I keep my fingers crossed it will happen soon enough.

I myself am fairly lucky; I live in Dublin and the hospital I need to attend for all my neuro checkup is in Dublin also. There are however people that have to drive far to attend theirs.

Like you say, once the diagnosis is there, you’re halfway there, but for many that is where the trouble also starts as they might live in rural areas with lack of public transport. But once you’re in the system, you know you will be seen to. It’s getting into the hospital system that often seems daunting for many. Not for me though; I checked myself into A&E because my old GP kept on misdiagnosing severe eye and facial pain, as well as fatigue. I knew it wasn’t an ear infection so after 6 months of hearing it “really was an ear infection,” I decided I was through listening to my old GP. It turned out to be optic neuritis and severe MS fatigue, and I got a preliminary diagnosis of high probability of MS after 4 days and CAT and MRI scans, lumbar puncture etc. As you can see so, once you are in the system, they will look after you. There just is a total lack of decent funding for what are otherwise brilliant neurologists.

What is this website about?

Quirky, tenacious, and neurologically compromised expat writing about life with multiple sclerosis.

Diagnosed 2,5 years after moving to Ireland, and now living with MS for 10 years, MS is more than an illness to Billie. It's a tool to raise awareness by showing others what life with a chronic neurodegenerative - and therefore progressive - illness is like.

It's often said that knowledge is power, and ignorance is bliss. Things published on my blog might not always be pretty as punch, but it's the unvarnished reality of life with MS. If it helps reduce ignorance, then my goal is achieved.